The value of health data and its role in Europe

(Open) data and the healthcare sector

Health is one of the top priorities of the European Commission. To support healthcare in European Union (EU) Member States, EU policies and actions in public health aim to:

• Protect and improve the health of EU citizens;
• Support the modernisation of health systems and infrastructure;
• Improve the resilience of Europe’s health systems; and
• Equip EU countries to better prevent and address future pandemics.

Open data to inform and support healthcare across Europe

Data can give policymakers, governments, businesses and citizens information about the current situation in their country and across Europe. Moreover, it can support services that contribute to EU and national policies by creating, for example, interactive maps or dashboards. These can help track vaccination rates, monitor the spread of a virus, monitor hospital rates and survey death rates. For example, during the COVID-19 pandemic, several countries across Europe used data to create dashboard showcasing these metrics, such as the Norwegian Institute of Public Health’s dashboard, the Rijksoverheid Coronavirus dashboard in the Netherlands and the European Centre for Disease Prevention and Control (ECDC) COVID-19 Situation Dashboard.

A good source to find European open data relating to health is data.europa.eu. At the time of writing, this official portal for European data  portal has 18,586 datasets categorised as ‘Health’. The datasets available on data.europa.eu originate from EU and national public administrations, including Eurostat and the ECDC. Examples are:

• Nursing homes, published by Metropolregion Rhein-Neckar on the German open data portal (GovData.de). This dataset is automatically generated and shows the location of nursing homes in the Rhine-Neckar metropolitan region, in addition to the city where they are located, the postcode, opening times and contact information.
• Coronavirus (Covid-19): Test sites, published by the Amt für Mobilität on the Swiss open data portal (opendata.swiss). The dataset shows where people can be tested for COVID-19. The dataset is updated by the Swiss Department of Health and can be used to create an interactive map for users to find testing sites.
• Surveillance Atlas of Infectious Diseases, published by the ECDC on their website. The dataset is a collection of information from EU Member States through the European Surveillance System (TESSy) and is used as a tool on the ECDC to allow users to interact with the latest data on infectious diseases to produce tables and maps. On the tool, users can select a health topic, subpopulation and indicator, and have it visualised on the platform.

Open data to develop services to improve citizen’s health

Across Europe, public institutions and private companies use (open) data to develop services. Some examples are:

• Serviço Nacional de Saúde (SNS) portal, a Portuguese platform that aggregates health data from various organisations across Portugal, including national health institutions and the Shared Services of the Ministry of Health. The portal aims to increase the transparency and efficiency of the national health service in Portugal. The portal contains information on health providers, including the location of hospitals, health centres and pharmacies, the costs of medication or user fees and an indication of waiting times.
• Tree of Truth, a dashboard created by Statistics Estonia to show Estonia’s progress towards their national strategic goals, based on national statistics. The tool informs citizens and policymakers across Estonia with metrics on the country’s progress on topics such as health. Examples of metrics in the dashboard are life expectancy, healthy life years, death due to chronic diseases and consumption of alcohol.

A step further: a European Health Data Space

Given the massive amounts of available data, and the new and innovative services that are being created with it, the European Union wants to facilitate a new data ecosystem where health data can be shared fairly and securely. On 3 May 2022, the European Commission presented its proposal for a European Health Data Space (EHDS). The EHDS aims to provide easier and more secure rules, structures and processes across the European Union to access and share health data. Its three main objectives are:

1. To empower individuals by increasing their access and control of their personal health data while helping data flow more freely;
2. To define standards for electronic medical record systems to ensure their interoperability, security and use while respecting the rights of individuals; and
3. To create a consistent and effective framework for organisations wanting to use personal health data for research, innovation, policymaking, official statistics, patient safety or regulatory activities.

By focusing on these objectives, the EHDS will address the complexity of European rules on data sharing in the health sector that were revealed during the COVID-19 pandemic and foster the development of digital services in the healthcare sector across Europe. To do this, the EHDS builds on existing legislation, such as the General Data Protection Regulation, the Data Governance Act, the draft Data Act, and the Network and Information Systems Directive.

Going forward: how can Europe best use open data to improve citizen health?

Data plays an important role to ensure that all European citizens have access to health services and medical care. As more data becomes available, additional services will be created and a secure structure for organisations (public and private) to access and share (health) data will be crucial. Data portals, such as data.europa.eu and national open data portals, are today already central access points to (open) data. Their role can be reinforced, making them well placed to provide the needed secure structures.

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Interested in more examples and use cases or inspired to develop your own health application based on open data? Explore data.europa.eu.